Baby girl, dilated miocardyopathy from Argentina, need help

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » za dec 05, 2015 9:46 pm

Her baby has DCM too?

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » zo dec 06, 2015 11:40 am

Yes
Met vriendelijke groeten,

Willy Witsel

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Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Corrij (therapeut) » di dec 08, 2015 8:44 pm

Hello Aleta,

In this difficult time i will tell you that my thoughts are with you.

Yesterday is history
Today is a gift
Tomorrow is a mystery

A big hug from me for you and Lara,

Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

sasje1903
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door sasje1903 » do dec 10, 2015 9:34 am

Goeie morgen

Aleta heeft gevraagd of ik namens haar wil updaten (zij gaat nu naar bed, 4uur eerder daar)

Laras surgery went well she is in recovery now on a lot of meds but doing fine!

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Corrij (therapeut) » do dec 10, 2015 5:57 pm

Thank God!
Those who do not have enough time for good health,
will not have good health for enough time.

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » za dec 12, 2015 11:47 am

Excellent
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

sasje1903
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door sasje1903 » za dec 12, 2015 12:15 pm

Gisteravond is de beademing gestopt en is Lara wat meer wakker. Ze heeft nog wel zuurstofbril (optiflow)
Ze drinkt al zelf water en klein beetje melk.
Gelijk na operatie was SF 19% en gisteren al 25%!

Artsen zijn allemaal erg tevreden en Lara is zo sterk als een stier zeggen ze.

(Aleta i translated your update in dutch..)

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » za dec 12, 2015 4:09 pm

Oke, I hope we woll see an SF of 30 in the near future
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » do dec 17, 2015 3:51 pm

How is Lara?
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » do dec 17, 2015 5:24 pm

Hi willy and Corrij!

We came home yesterday, Lara is amazing.
Her mitral ring was closed so now has the right size for her age. Still a mild deficiency, doc said that always stays some deficiency, is to soon but maybe it goes, even so it supouse that will not be a problem.

Her heart is already smaller but that is because with less blood coming in and out, is like less inflamated, and we have to wait to see real measures because is the surgery still is close.
But z score will be smaller from diagnosis.

About SF she came out from surgery around %20-23, yesterday before we left the hospital she was on %25-26. The %28-30 she reached was because of demand from the bad work of the valve. So now we have to wait if she bounce back, cardiologist is very optimistic, but said we need to wait a few month to she real improvements :(

Lara still is a little afraid, but happier in home. Eating great, she ask a lot for a bottle ( she had like a regression the first 2 days awake) still is a little weak but I guess is normal after a marjor surgery.

We started with supplements already. No carvedelilol still. Less diuretics, the rest is the same.

She recovered fast, I still can't believe all she been through and is very scary when I think about it.

I'm with stress post traumatic! But grateful big time.

Cheers

Aleta.

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Corrij (therapeut) » vr dec 18, 2015 3:15 pm

Hi Aleta,

That is great news :D I am very happy for you, you can throw all your fears out of the window and enjoy cristmas time.

Give Lara a big hug she is amazing :D :D

warmest regards,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » za dec 19, 2015 11:34 pm

I told you so, Lara is strong!

Be patient, the cardiologist is right I think, 2 - 3 months from now you can see the result realy

She must first recover,, and you too! :D
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » za dec 19, 2015 11:59 pm

Hi willy!

I wanted to write you sooner but I'm a canguroo mom this days.

We are a little sad, we realized that after all of this, DCM is still there and we don't know what path is gonna take. The surgery took off a risk factor, but the part of her heart wanting to improve and not doing it cause of mitral efficiency is just a guess.

We don't know if she will bounce back to the SF %28-30 or what, we feel like we are on squere 1 again. The only thing we know for sure is with the valve like she had, only would get worse. But if she is gonna get better is a mastery.

I really hope this is just our fear talking. I really want to see my girl become a woman someday...

I hope this surgery don't take away the strengh she has. One thing I learned is that she is amazing strong!!!

Yesterday cardio heard heart, lungs and belly and everything was OK.
We have check up on Tuesday with echo and EKG, I pray for some little after surgery improve. That SF %25 really scares me.

Still with post trauma stress as you see!

Besides all of that, is a miracle we are all 4 of us at home which I'm very grateful.

Hugs,

Aleta.

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Willy » zo dec 20, 2015 11:56 am

You have to be patient with this Aleta

Always remember that heart failure is a progressive disease. It gets worse over time

That is not the case for Lara she improved her condition

This operation was unavoidable and will at the end improve her condition even more

To my know.edge the maximum EF is 30%. In a couple of months she will be close to that value

Sit back and do something for your self. Buy new clothes, shoes, lipstick what ever or go to the beach with the family if Lara is able to do that

In other words, take more care for Aleta, she deserves that!
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Lid geworden op: zo aug 03, 2014 6:39 pm

Re: Baby girl, dilated miocardyopathy from Argentina, need help

Bericht door Aleta » zo dec 20, 2015 2:07 pm

Thank you :/

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